*Hope for Addy Grace*: Appointment Day

Tuesday:

Tuesday afternoon we had Addy’s clinic appointment with Dr. Schroth. We had to be there at 12:00pm to see the Physical Therapist, Karen Patterson. I would say out of the entire appointment this was the worst part for us all. Addy isn’t a fan of PT and cries every week. A big part of her daily routine is stretches to keep her Range of Motion (ROM) where it needs to be. After the hospitalization in April we lost A LOT of Addy’s ROM (basically all of it) due to her not being stretched. When we got home from the Hospital I told James that I felt so guilty not stretching her and that I felt like I had failed her as a mom but he reminded me that our biggest concern those three weeks was keeping her alive not stretching her, which of course he was right! In my head I know that statement is true but my heart breaks knowing I could have done something to help. Addy’s ROM in her feet and ankles are bad. She has AFO’s that she is supposed to wear daily but since her ROM is so bad we can’t get them on her feet. The PT told us we have two options…serial casting (the two words I was dreading to hear) or adapting her AFO’s to make them work to help with her stretching and ROM VERY SLOWLY. She suggested starting with the AFO “remake” and then go to serial casting. We aren’t sure if there is even somebody in our area that does casting and I’m sure you are wondering what it is. Basically her feet/ankles will be put in cast and monitored. Every few days the cast will be removed, checked and then put back on to help bring her ROM back. The PT said there are doing a new method and are seeing better results. They are only being casted for 3 weeks (max) and she told James that she would only want Addy to be casted for 11 days. This is obviously not the path we want to take but will do it if it will help Addy. Please pray that modifying her AFO’s will be all that we need to do and we won’t have to go the route of serial casting. The PT also suggested having a hip x-ray done to check her hip and sockets. After seeing the PT we went to see Dr. Schroth. She was very impressed with Addy and only changed a few numbers on her Trilogy (breathing machine) and upped two of her meds (only because of her weight increase). I love seeing Dr. Schroth because you can tell she really cares; she always spends so much time in the room with us talking about us, Addy, the past year, etc (she even called James Thursday to make sure Addy made it home ok). SMA Doctors are truly something special…they generally care for their kids and their families and they let it show! After seeing Dr. SChroth we went to the lab for blood work. The famous Noni wasn’t there and the lady that took Addy’s blood was unsuccessful! She is becoming harder and harder to get blood from and the poor thing has battle wounds to show for it (picture below). Dr. Schroth wrote a script for us to have blood work done at home and sent to her so hopefully we can find the guy who did it before who was great! After the unsuccessful lab visit Erin, the nutritionist came to visit and she didn’t change and single thing…woo hoo! Once we were finished with clinic day we headed out to the waiting area to leave and met another SMA family, the Grindles. We knew they were going to be there because had already made plans to meet up with them and a few only families for dinner that night! Addy, Tracy and my mom had actually ran into Ben’s older sister Lily before they realized who they were because his adorable 3 year old sister was in the waiting room with her Dog (a balloon) and she was telling them that her dog had SMA like her brother Ben…how stinkin cute! Her parents should be proud…teaching the public about SMA…GOOO LILY!! We said some hello’s, took pictures of Ben and Addy together (as they talked to one another…sooooo dag on cute) and said “see you at dinner” as we all headed to the elevator. We were in a hurry to leave because we had to drop James off at the airport to get back to Roanoke for work on Wednesday. His flight was leaving Madison at 6:30 and we were leaving clinic at 5:15! Naturally as we hit the button for the elevator floor 1 decided they needed to have a fire drill! FUN STUFF!! We didn’t know if we could get on the elevator or not so we waited about 10 min and then somebody finally came and told us it was ok to go. We raced down the elevator, ran to the car and drove like a mad man across town to the airport. Thankfully James made it just in time! Nothing like adding a little adventure and excitement to the LONG day we had just experience! After dropping James off at the airport we headed back across town to meet 3 other families for dinner. We ate a neat restaurant called “Quaker Stake and Lube,” it was an old car garage that had been turned into a restaurant and when we got there we realized quickly it was a very popular place because the place was PACKED!! We had a great time meeting new friends and catching up with old ones (a family we met in Cincy at the SMA conference). My mom actually had dinner with my Great Uncle Alvin and Aunt Gloria who live 20 minutes from Madison. I know she was happy to see them! After dinner we headed back to the hotel and CRASHED!! We were all VERY tired!!